#Movingon #CYPBartsHealth #WeCare Values #Teamwork #BalconyTime

5/4/19 Week 1

This week I started a new job at Barts Health as the Director of Children’s Nursing, Barts Health provide services for Babies, Children and Young People, at the Royal London, Newham, Whipps Cross, Mile End, St Barts Hospitals and Community Services in Tower Hamlets. I’m also working for City University and the East London Health & Care Partnership for one day a week. It’s certainly a diverse and exciting post!

Over the past year I’ve been juggling this post part time alongside my role at NHS England, I’m incredibly grateful to Caroline Alexander the Chief Nurse there (who tweets as @CAlexanderNHS) for offering me this secondment opportunity back in January 2018, which has led to me stepping back into the provider landscape full time. The flexibility of Directors at NHS England including Neil Churchill @neilgchurchill and Kevin Holton who allowed me to do this was appreciated too.

Throughout my career I’ve focused on issues relating to children and young people. Ensuring we offer them the best opportunities and stable foundations to make a difference in their lives is what matters most to me, it’s my ‘why’, seeing them flourish is the most uplifting experience in the world.

One of the things that attracted me to applying for the Director of Children’s Nursing post full time was the team.  When I arrived at Barts Health back in January 2018 I was surrounded by people whose core purpose was also about improving children and young people’s experiences and health outcomes. Yes, there are challenges relating to red tape, limited financial sources, far from perfect environments, yet people have an energy that’s contagious, a desire to work to improve services with a shared purpose of improving the care of the North East London population and beyond. It’s these values that drew me to the team.

Michael West and the Affina Organisational Development team have been working with @NHSBartsHealth for some time. The benefits of this have resulted in time for the Child Health Team to come together, build relationships, reflect on challenges and plan the future. The evidence base that team based coaching improves performance is strong and a series of blogs explores this further https://www.affinaod.com/article/can-achieve-better-team-working-organisation/

The other key element is that people in the organisation talk about and live the Barts Health ‘we care’ values https://www.bartshealth.nhs.uk/values. The aim being is that these values of being: Welcoming; Engaging; Caring; Accountable; Responsive and Equitable are visible in all our interactions to patients, carers and staff. We talked about these values at the Trust induction on my first day, yet as I got out and about this week I’ve seen these values repeatedly brought to life.

Getting IT kit functioning is always a challenge when starting a new job, l was chatting with Spencer as he got my email account up and running on my mobile phone, about why he works in the IT team, to which he answered ‘I help ensure we deliver great patient care, working in the NHS gives me a real purpose to the work I do’.

And then I got to meet public health colleagues based in the Trust and hear about the ‘Horizons programme’ that reaches into schools to connect with young people to offer work experiences, summer schools and careers events. Andrew Attfield @AAttfield talked about his commitment to changing life outcomes through creating pathways into employment for people in local communities.

This tweet from the CEO of Barts Health @A_WilliamsNHS also stood out for me. Project Search offers work placement opportunities to young people with learning disabilities to help them gain experience, Alwen shared how she’d met the young people at Whipps Cross and seen them grow in confidence since the start of the Project Search programme. These young people are often graduates of NHS neonatal and paediatric services, seeing them gain independence through employment is very special and indeed life changing for them and their families.

Seeing the ‘we care’ values lived has been important and something I’ve been reflecting on in my ‘balcony time’ ie the time I use to try and take a step back and think about the activities happening in the busy day to day. Creating this time to reflect is an issue we explored with Dr Gemma Munro @gemmamunro1 on the Ascend Women’s Leadership programme supported by @NHSLLA, I’m going to try hard to ensure I create this space each week. Writing this blog is part of this process as I commute on my daily train journey as I try to untangle my thoughts. I wonder how many of us carve out balcony time? What do you reflect on?

So my frustrations this week include dropping my personal phone down the loo (expensive and hassle inducing mistake), getting new IT kit up and running (still work in progress), constantly asking myself what are the ‘must dos’ here and focusing on that.

It’s been a muddle-some week in many ways, but it’s also been one framed by values, making me question and challenge myself ‘am I living them….?

Remembering Ads the Poet #AdsTalk19 #PatientExperience #PtExp #CYPExp and #Movingon from @NHSEngland


On the 1st April 2013 I joined NHS England as the Lead for Experience of Care, focussing on Babies, Children, Young People and Maternity. I was challenged by trying to define what experience of care meant and if I’m honest I’m still challenged by it today. Getting relational care right ie ‘being with and for people at challenging times’, alongside creating straight forward functional processes ie ‘getting the admin stuff right’ in pleasant environments, along with ensuring competence of staff so that we ‘do the right stuff safely’, all make up our experiences in my view, compassion, competence and safety are inextricably linked.

One book I’ve returned to repeatedly is ‘Understanding Patient Experiences’ edited by Angela Coulter @acpatient and Louise Locock @LLocock amongst others. It’s well worth leafing through a copy at your library.

Of course the NICE Guidance on Adult Patient Experience (2012) https://www.nice.org.uk/guidance/cg138 offers an evidence based analysis and direction on this agenda and the National Quality Board (2015) published a ‘shared ambition’ of National Bodies to improve experiences https://webarchive.nationalarchives.gov.uk/20161103234108/https://www.england.nhs.uk/wp-content/uploads/2015/01/improving-experiences-of-care.pdf In 2018 NHS Improvement published the Patient Experience Improvement Framework https://improvement.nhs.uk/resources/patient-experience-improvement-framework/

All these resources are helpful but if I’m honest, quite wordy and they tend to focus on adult care rather than the experiences of children and young people. I needed someone to help me understand what good care, good experiences, looked and felt like. It was Adam Bojelian who helped me understand what mattered most to children. Adam tweeted and blogged using a blink technique (something I’m always in awe of) for me he nailed what a good patient experience is in his blog http://intheblinkofaneyepoemsbyadambojelian.blogspot.com/2013/04/what-does-good-care-look-like_2880.html

We used Adam’s work as we toured England running a series of events on Children and Young People’s Experiences of Care following the publication of the results of the CQC Children’s Survey (huge thanks to Ruth Evans and the Patient Experience Network for coordinating these http://patientexperiencenetwork.org/resources/reports/). Here’s a blog published by Picker Institute Europe @pickereurope with lots of examples of good practice to help us improve https://www.picker.org/news/blog/10-ways-to-build-quality-care-experiences-for-and-with-children-young-people-and-their-families-2/

Adam sadly died in March 2015, yet his legacy lives on and we continue to share his reflections and aim to live up to his standards of good care. Adam was celebrated by the Patient Experience Network as being an outstanding leader in Patient Experience, which he was indeed! See a short film of the celebrations that day in his memory http://patientexperiencenetwork.org/penna15presentations/ Thanks to Ruth Evans of @PEN_NEWS for recognising Adam’s contribution to #CYPExp work.

Each year Adam’s parents Dr Zoe and Paul who tweet as @4AdsthePoet host a lecture in his honour with support from @horizonleeds @NHSEmployers @NHSConfederation. I had the privilege of doing the first lecture discussing Children’s Participation in HealthCare, ‘Together we can do great things’ in 2016, followed by Rob Webster in 2017 whose lecture ‘Hidden in plain sight’ talked about families, carers and the complex system we as professionals create for people to navigate. Last year Dr Emily Harrop talked about the involvement of children, young people and families in the NICE End of Life Quality Standard. There’s more information on the lectures here http://intheblinkofaneyepoemsbyadambojelian.blogspot.com/

This year we heard from Dr Carmen Soto who tweets as @GourmetPenguin. Carmen’s PhD research focuses on the interaction between children, families and health services. Through conversations with patients and families, she came to deeply appreciate the complexity of the lives of children living with long-term conditions in the real world. Carmen proposes that healthcare professionals can live and work in a “bubble”, often oblivious of the impact that healthcare decisions have on children and their families. In the rich discussion that followed Paul, Adam’s Dad asked us as health professionals for honesty, open/growth mindsets and an ability to release control, Rob Webster challenged us to think about shifting the perspectives of ourselves and colleagues to build trust by establishing shared goals, recognising expertise and building relationships.

This tweet from Willow a parent who participated in Carmen’s research sums it up, the power of human connection and the impact of appreciating the complexities families face….

Adam’s lectures are always a lively gathering of Twitter friends, including John @johnwalsh88, Thines @ThinesG, Denise @denise123_cohen, Sharon @SAPHNAsharonOBE, Rob @NHS_RobW, Louca-Mai @Dr_LoucaMai, Amy @AmyFrounks et al and with many more joining in virtually such as Teresa @agencynurse and Sian @spencer_sian, Gill @whoseshoes thanks to the power of technology. We all meet with a common aim, remembering Adam whilst having an eye on the future, thinking what can we improve, what can we make even better with the people that we serve?

It seems fitting that my final day at NHS England is spent celebrating the contribution of a young man who was so influential on my time in this national role that I’ve had the privilege of doing. These words on a glass block are a little battered now but are often slipped in my pocket ….

Thank you Adam.

Thank you to Dr Zoe & Paul for continuing to share Adam with us all.

#Ultra #Running #NHS1000miles #JurassicCoast


Back in 2016 I thought about doing a marathon. I needed to find one that was fairly low key as I knew I wouldn’t be fast! The Race for Life https://raceforlife.cancerresearchuk.org/ seemed to offer exactly what I was looking for, a chilled out event whilst raising money for a great cause. Whilst for me it’s not about the times but the experience, I was delighted to finish it in 5:23.

This gave me a taste for doing more marathons and I’m on my way to running a hundred of them (well that’s my goal!), although perhaps run/walking them may be a better description. I’m never going to be fast, but I love the sense of achievement when I’ve completed a run.

The running bug was part of what drove us to establishing #NHS1000miles for #NHS70 with Catherine Wilson and Nicola Jackson and many others, find out more on the ‘We Communities’ blog site http://www.wecommunities.org/blogs/3443

Banking miles for #NHS1000miles has led me to seek out new challenges including dabbling in ultra running, ie anything more than the marathon distance of 26.2miles. In May 2018 Mike and I conquered the Cotswold Way, 107 miles over 3 1/2 days (camping in between) it was a tough but rewarding adventure.

This weekend we’ve been conquering the Jurassic Coast Challenge, 3 marathons in 3 days, goodness the Dorset Coastline has more hills than Wales! 🏴󠁧󠁢󠁷󠁬󠁳󠁿 Dean Royles would call hills ‘character building’ and @Chap_the_man says they are ‘mounds of opportunity’. The hills certainly just kept on giving! Or as the Race t-shirt put it so well ‘they’re hills, get over it!’

Day 1 took us around Portland and over to Lulworth Cove.Day 2 took us from Charmouth back to Portland.

Day 3 took us from Lulworth Cove back to sandy Studland Bay.

So I’ve been reflecting on the lessons running has been teaching me for life…

1. If you’re tired, rest, take in the scenery and then keep going …

2. If you want to drink full fat coke, bits of mars bar or snickers, eat marmite sandwiches, ultras give you a great excuse before getting back on the healthy eating programme after the run 😉. The Votwo organisers sourced great food for us this weekend.

3. Marshals are amazing, they are usually fab volunteers who stand in the cold, rain, wind and encourage you on, the words ‘keep going’ ‘looking strong’ (even if you don’t feel it) mean the world. So I’ll be an encourager…

4. Prophylactic compeed is amazing – we all need stuff to help us, a network of great supporters can make the world of difference in supporting us prevent pain happening …. or even helping us when it does.

5. Take things in ‘bite sized chunks’ tackling long distances 10k or 10miles at a time, seem to make things far more achievable, this seems to be same in life too.

6. And as a famous sports brand reminds us .. ‘Just…..

We’ve had an amazing weekend, with huge thanks to the whole team at Votwo events for superb organisation. We’re hoping we’ll be back soon https://votwo.co.uk/collections/trail-marathon-challenges

#EmergencyandUrgentCare #Schools #PatientExperience #PtExp celebrations at #PENNA #HSJPartnershipAwards with @CavellTrust


Back in 2012 I had the privilege of working at the NHS Institute for Innovation and improvement. I’d gone there originally on a one year secondment in 2008 thanks to the support of my then manager Bernadette Herbert @bherbert59 to work with a team addressing activity in Emergency and Urgent Care services relating to Children, Young People and families.

It was a wonderful opportunity where I learnt about the work of Don Berwick and the Institute of Healthcare improvement (lHI) and met inspiring people such as Helen Bevan @helenbevan, Lynn Maher @LynneMaher1 and Sam Hudson @Uberology (amongst others) who led the way in encouraging us to think creatively and differently to address complex challenges in healthcare. I must also give a shout out to people who said ‘yes, give it a go’, who opened doors and made things possible whilst I was there too, thanks to Charlie Kenney @KeeneyQi, Lynne Winstanley @LynneWinstanley and Tony Butterworth @cabutty.

The work on Children’s Emergency Care by Sarbjit Purewel and Dr Venkat Reddy @VenkatReddyUK led to the publication of ‘Focus on Children and Young People’s Emergency and Urgent Care https://www.rcem.ac.uk/docs/Paediatric%20EM%20Guidance/CEM7226-Focus-On-Children-Emergency–Urgent-Care-Pathways—March-2010.pdf

Further work with teams across the country including pharmacists, CCNS, GPs, A&E and paediatrics, parents and young people et al with the support and guidance of fabulous people like Christine McDermott, led to the publication of a ‘whole system guide to Emergency and Urgent Care’ https://www.rcem.ac.uk/docs/Paediatric%20EM%20Guidance/11.%20A%20Whole%20System%20Approach%20to%20Improving%20Emergency%20and%20Urgent%20Care%20for%20CYP.pdf

Reflecting on this learning, many years later the Nuffield Trust published a blog I wrote summarising the learning from this programme https://www.nuffieldtrust.org.uk/news-item/where-next-for-children-s-emergency-and-urgent-care

As part of the Emergency and Urgent Care work at the NHS Institute we engaged with schools, developing an emergency and urgent care lesson plan. The secondary school lesson plan has since been updated by @NHSEngland as part of the NHS 70th Birthday celebrations and can be accessed here https://www.england.nhs.uk/participation/learning/schools-resources/

The work with primary schools resulted in the creation of the Monkey Wellbeing @MonkeyWellbeing Primary School Lesson Plan pack, with the amazing Helen Sadler. We sent out a copy to every primary school across England to get them talking about appropriate use of NHS Services https://www.monkeywellbeing.com/resources/schools-resources/ This work was externally evaluated to identify its impact https://www.monkeywellbeing.com/wp-content/uploads/2014/09/nhs-institute-report-final.pdf

It’s joyful to see the passion of Bev Matthews, @BevMatthews_ of the horizons team and Ruth May, @RmayNurDir our new CNO as they engage with children and young people in schools encouraging them to think about future careers in the NHS. I think the new unisex children’s uniforms are fabulous! We certainly loved engaging with children in schools in the emergency and urgent care work, it brought so many new insights.

As a result of the primary school work we applied to be recognised by the Patient Experience Network at their National Patient Experience Awards event #PENNA. This must have been back in 2012 and whilst sadly we didn’t win an award that year, it did give me a taste of what celebrating great staff who do amazing things day in day out could look and feel like. Importantly I saw first hand the impact of generating enthusiasm in teams to keep improving things for and with people by valuing and recognising the work what people were doing.

I’ve gone back every year since to the #PENNA Awards, always held in Birmingham (middle of the country so accessible for all) and headed up by Ruth Evans @PEN_NEWS now Ruth Evans MBE (huge congratulations so deserved, she sadly isn’t my sister!) and the fabulous Louise Blunt, they are quite a double act!

If you haven’t been to a #PENNA award day – take a look at the short video summaries they’ve created, you can see Jane Cummings @janemcummings our previous CNO in action, along with a lovely memorial to Adam Bojelian @4Adsthepoet in 2016 too http://patientexperiencenetwork.org/awards/

So Wednesday this week took me back to Birmingham to celebrate staff delivering amazing patient experiences every day to patients and the families/carers at this years #PENNA Awards. It’s always energising and totally inspiring.

People like Lesley Goodburn @lgoodbu who works tirelessly to raise awareness of Pancreatic Cancer https://purplerainbow.co.uk/ which sadly took her husband Seth (#SethsLegacy) in an untimely manner is an annual attendee. As is Lee an amazing colleague (who has taught me so much about complaint policy and process in the NHS over the years) who is another key attendee as chief musical director, follow his insights on music at @backstreetjoe.

Fabulous Clare Enston @clareenston of NHS England who leads the insight work spoke about what patients tell us matters most to them, is was great to here her focusing on Children and Young People this year.

It was also a joy to meet in person a long standing friend from twitter Richard Littledale @richardlittleda and his son Jonathan. Sadly his wife Fiona died last year, they have established ‘The Fiona Fund’ @TheFionaFund in her memory to support healthcare professionals who are committed to improving cancer care https://thefionafund.wixsite.com/thefionafund

Do take a look at the amazing twitter activity that took place at #PENNA, it was an great day and we were trending too! I’m hoping @SaraTurle will publish her opening address from a patient and collaborator to #teamNHS it was outstanding!

As if my Wednesday couldn’t get any better I hopped on a train back to London to spend the evening with the @CavellTrust team at the HSJ Value Awards. The Cavell Trust support Nurses and Midwives experiencing hardship. It’s a charity close to my heart as I’ve seen so many colleagues struggle at times, Cavell is a lifeline to many. Whilst the Cavell Trust didn’t ‘win’ we know they are winners day in day out to the nurses and midwives who face difficult circumstances and need somewhere to turn to. Let’s ensure we’re #HereforNurses

So reflections on this week include immense gratitude to those who inspire us our way, who inspires you? Lets make sure we celebrate them …

#ChildHealth stepping into the sun at #CNOSummit #NHSLongtermplan are you in #TeamChildHealth?

It’s feels like Child Health is stepping out of the shadows and into the sunlight and not a moment too soon Emma Rigby CEO of @AYPHcharity, Russell Viner @RCPCHPresident and Nigel Edwards @nedwards_1 would suggest from their recent report on Children and Young People’s health services ‘Sound the alarm, we must improve’ https://www.nuffieldtrust.org.uk/news-item/sound-the-alarm-we-must-improve-our-young-people-s-health-services If we are to improve child health outcomes we must speak up, look out and take action.
This week Child Health took its place at the table with #TeamCNO at Chief Nursing Officer Ruth May’s @RMayNurseDir first #CNOSummit.
For those that weren’t in the room, here are slides from the session by Wendy Nicholson, Angela Horsley and the @NHSYouthForum they give us a focus on challenges and opportunities ahead.
As we bring the #NHSLongtermplan to life, will we as child health champions and as ambassadors for childhood grasp this golden opportunity and run with it to put child health in the spotlight locally, regionally and nationally? Our personal contribution, energy and impact whether as a health care assistant, nursing associate, nurse, play specialist, doctor, AHP, manager, commissioner will matter if we are to have an impact on child health outcomes. Importantly we need to work with children, young people, young adults, parents/carers, siblings, communities, professionals, local councillors and politicians if we’re to change the future of child health. 
So what are the things that we can focus on as we step up to this leadership challenge?
  1. Do we know our patch, what are our challenges?

Child Health profiles for 2019 have just been published, have you had a look at your patch and seen the challenges faced?

I’ve downloaded my local ones in the East London Health and Care Partnership, our local Sustainability and Transformation Partnership (STP).

Signing up for the CHIMAT bulletins from PHE is well worth it https://fingertips.phe.org.uk/profile/child-health-profiles as it helps us secure access to up to date information like this.

2. Are we up to date with national policy?

The National Children’s Bureau (NCB) summarises the changes proposed by the NHS Long Term Plan, with a particular focus on commitments most relevant to children and young people.  It reviews the overarching changes – sets out the overall direction of NHS reform as it affects all service users (pp2-5) Explores commitments relating specifically to children and young people (pp6-7) and sets out specific commitments of relevance to the sector including maternity services, support for carers and vulnerable families, public health and health inequalities (pp8-10) https://www.ncb.org.uk/resources-publications/resources/nhs-long-term-plan

The Association of Young People’s Health @AYPHcharity have also published their take on the NHS Longterm plan too http://www.youngpeopleshealth.org.uk/wp-content/uploads/2019/01/What-does-the-NHS-Long-Term-Plan-say-for-young-people-10-24.pdf
3. What’s the part of the pathway that you work in, matters most to you and the children, young people and families that you serve? How can you share your insight and expertise?
For primary care, IPSOS MORI who run NHS England’s GP Survey, lowered the age of feedback on GP Services to 16 this year, the survey results highlighted that young people wanted easier appointment making processes, better communication with professionals and support for mental health needs and better support in primary care when they have Long Term Conditions https://www.ipsos.com/ipsos-mori/en-uk/gp-patient-survey-experiences-young-patients-aged-16-24-years-old

We know from the Care Quality Commission Children’s Survey https://www.cqc.org.uk/news/releases/national-survey-shows-most-children-young-people-report-good-experiences-hospital-care that we can do more to improve how we communicate with children and young people.

We have areas of great practice in some parts of the country that we need to spread for example the development of @CYPMeFirst a resource to help us improve our communications with children and young people https://www.mefirst.org.uk/

And ‘We Can Talk’ programme which builds the confidence of staff when they are working with children and young people experiencing mental health distress https://wecantalk.online/

4. What are the pressing issues that you see day in, day out in Child Health that need attention?

Some of the areas that keep me awake at night include: Special Educational Needs and Disability (SEND); Safeguarding; Mental Health; Neonatal care; Intensive care/high dependency care; Prevention/keeping well; Primary/Urgent Care/integrated models of care; Learning Disabilities; Long term conditions; Cancer; Transition/Young Adult Care; End of Life Care/Bereavement Care; Young Carers. Along with of course addressing Workforce (especially in ensuring we can keep care closer to home), data and digital opportunities and quality improvement agendas. There issues are complex and wicked, but cannot remain in the too difficult box. Can you invite senior leaders and influencers to come and ‘walk the patch’ to share the challenges you see?
5. How can we work with children, young people and families to ensure improvements focus on what matters most and have the biggest impact? 
Experience, Voice, participation and engagement are key issues in how we drive improvement, over the years the @NHSYouthForum have developed a range of amazing resources to help us ensure we’re working with young people to improve services https://www.england.nhs.uk/participation/get-involved/how/forums/nhs-youth-forum/

It was wonderful to have Amy and Curtis of the @NHSYouthForum at the #CNOSummit, they were given such a warm welcome and they did a wonderful job of chairing the session.

At the Session we identified lots of good stuff happening….

And lots of asks for help too….
So a challenge, are you going to be part of #teamChildHealth as we go forward? How can we collaborate with other health services, voluntary services, education, local authorities and police to secure better health outcomes? We can only improve when we work together across organisations, challenge, ideas and insight welcomed.….

#InternationalWomensDay #IWD2019 #FemaleRoleModels #BalanceforBetter


Happy #InternationalWomensDay #IWD2019! It’s been a week of global celebrations leading up to the 8th March, recognising the social, economic, cultural and political difference that women make in the world. The day has been marked for well over a century, with the first IWD gathering in 1911, supported by over a million people, today IWD belongs to all groups everywhere, follow @womensday @UN_Women @LeanInOrg for tweets.

This year the celebrations importantly call for an acceleration of gender parity using the hashtag #BalanceforBetter. It was a joy to join the Global Institute for Women’s leadership @GIWLkings with Julia Gillard @JuliaGillard on Tuesday evening as they shared the findings from @IpsosMORI’s global survey on equality https://www.ipsos.com/ipsos-mori/en-uk/men-are-not-emasculated-caring-children . At the Q&A panel Pamela Hutchinson @pshutch01 challenged us, encouraging us to be more savvy in our lobbying and ensuring women from BAME, along with those who are disabled, are part of our more gender balanced future, all of which is good for women, men and children.

This call was reflected at the @NHSBartsHealth #BHIWD19 celebrations where the challenges relating to caring responsibilities were also highlighted, celebrating managers who could see the importance of flexibility in retaining and nurturing staff who are carers.

I’ve been reflecting on the opportunities I’ve had throughout my life and career, there have been so many wonderful women who have encouraged and inspired me. There were many in volunteering roles such as my Brownie and Guide leaders, Jean Erasmus, Hilary Ferris and Miss Tanish. Their support resulted in me gaining my Queen’s Guide which I’m sure helped me secure my nurse training place back in 1988. Then ‘Sister Pat’ of Coronation ward at Cardiff Royal Infirmary gave me my first staff nurse post on the Children’s ward in 1991, I’m sure having been a Brownie Guide Young Leader was the magic ingredient that meant I got the job! It was where I met Sian Thomas another of my Children’s Nursing heroes, friend and colleague to this day, do follow her @Thomas16S.

Other key influencers were my Sunday school teachers and youth church leaders, Margaret Wells, Cynthia Chiswick, Mary Jones, Marilyn Moulding, Pauline Davies, they all instilled the values of thinking beyond family connections, to community and global issues and the difference we could make personally and collaboratively with kindness and a spirit of helpfulness.

There was also my dress and design teacher, Miss Beresford of Pentrehafod Comprehensive in Swansea who wore bright stylish clothes, she fostered a quirkiness that continues to this day with my love of finding something bright and cheerful particularly in charity shops, amplified if it’s comfortable too, hence my love of Doc Martins!

There are so many wonderful women who I could celebrate in this blog, but I’m going to fast forward to 2013 to when I first joined NHS England. I was ‘adopted’ by Gillian Fletcher and Mary Newburn @MaryNewburn1, both are hugely experienced in Co-production, Co-design, Co-delivery approaches, or to put it simply working ‘with people’ to make things better. They led the way on refreshing and amplifying coproduction with people using maternity services, moving us from Maternity Services Liaison Committees (MSLCs) to Maternity Voices Partnerships (MVPs), resulting in chapter 4 of Better Births published by @NHSEngland https://www.england.nhs.uk/wp-content/uploads/2017/03/nhs-guidance-maternity-services-v1.pdf This work along with a coproduction programme of ‘Whose Shoes’ workshops, developed and led by the amazing and incredibly determined Gill Phillips @WhoseShoes and Florence Wilson @FWmaternity continues to create positive creative connections and relationships with professionals and communities, bringing women’s/family voices to the forefront in always working to improve maternity experiences.

Mary introduced me to the wonderful Lisa Ramsay @Doula_Lisa who was the chair of Reading Maternity Voices at that time. Lisa makes partnerships flourish, it’s in her DNA, resulting in her joining NHS England and establishing the ’15 Steps in Maternity’ programme https://www.england.nhs.uk/wp-content/uploads/2018/05/15-steps-maternity-toolkit-v9-1.pdf

Which brings me to women empowering women, for the NHS’s 70th Birthday in 2018, nominations were invited by the NHS London Leadership Academy @NHSLLA to identify 70 women NHS leaders in London. Lisa without my knowing nominated me and the result was I joined the ASCEND women’s leadership programme led by @gemmamunro1 of @inklingwomen, commissioned by @NHS_Jane. I will always be grateful to Lisa for investing the time in that unexpected nomination, it has opened so many doors to fresh thinking for me.

Being part of the ASCEND programme has been an enlightening experience, it resulting in me joining a group of women from diverse roles across the NHS, who all want to be their best at work, at home and in life. The programme has been hugely valuable in shifting my thinking, encouraging me to recognise my ‘lizard brain’, to step into the ‘ring of fire’ as well as carving out ‘balcony time’ to regularly address my purpose and personal intent.

On our first day we were given workbooks (I still have my very dog eared copy!) from which I was asked to read, Marianne Williamson’s words…

That affirmation that when we shine it gives others permission to do so too is powerful. Having a catch up with Lisa last week, we chatted about this and a previous blog I’d written about Peacocks, she said her coach had shared when we bake the most glorious loaf of bread we don’t put it under the counter we put it on display, we share it and enjoy it together, it’s a great reflection, thanks Lisa!

During the ASCEND programme we did a strengths identifier, mine are that I’m a learner, empathetic, a developer, I value connectedness on many different levels, and seek positivity, my strengths lie in the domain of relationship building. Having this affirmation means I can now continue to build on these strengths and seek out those colleagues are more strategic and detail focused than I am!

A quote that was shared during the programme is ‘Your life is your masterpiece you decide the colours and what goes on it’ and ‘Don’t expect your future to look like your past, let yourself imagine a wild new world’ we can all take control if we want to. Leadership development opportunities such as ASCEND create the space for us to brighten and develop our lives, ultimately enhancing our contributions on many levels and the ASCEND programme has certainly done this for me.

Interestingly I’ve been listening to the Brené Brown’s audio book ‘Daring to lead’ as I walk to and from the train station (another nudge from Lisa was a gift of this paperback). Brene reflects on loneliness and how exhausted it can make us feel, yet cultivating and nurturing our women’s networks can be really energising tackling this loneliness we can sometimes feel head on. Last Sunday I spent a day with two amazing girl friends conquering the hills of the Chiltern’s, creating headspace, enjoying the views (and the drizzle) it was so important for all of our mental health, before looking ahead to the week in front of us. I suspect many leaders in the NHS feel lonely on occasions and the CNO Summit next week will be vital in securing support systems for and with each other. Do follow the action via #CNOSummit #TeamCNO I’m delighted the @NHSYouthForum will be part of the conversations.

So, thank you to the women and also the men who support women to flourish, we can only achieve #BalanceforBetter and create better more balanced futures for children, if we all share this space and work collaboratively to progress this agenda.

Thank you also to my daughter Beth for the fabulous poster she did for me back in 2017 (posted at the start of this blog) which celebrates women and the difference they make, let’s keep celebrating and opening doors for each other so that we can become our very best selves.

As a final gift, here are some of my favourite books from women I admire, thanks to @malala @jessphillips @LisaSaysThis and whilst written by Jo’s husband Brendan I’m also including Jo Cox’s ‘More In Common’ supporting the @JoCoxFoundation, its essential reading.

Do take a look at the tweets coming from London Women’s Leadership Network on International Women’s Day #LWLNIWD #IWD2019 celebrations it’ll be wonderful!

Happy International Women’s Day 2019, lets celebrate! and take action to secure #BalanceforBetter.

#BadgersPartingGifts #ChildDeath #Bereavement #EndofLifeCare #AlwaysLearning #AlwaysImproving


Have you read Badger’s Parting Gifts? It’s a beautiful story book written by Susan Varley that engages children in thinking about all the gifts people share prior to dying, an elderly badger and his woodland friends bring this to life. We shared it as a family when my mum in law died quite unexpectedly, it was incredibly cathartic, Beth my daughter, Mike my husband and I all cried together as we read it, until then we’d ‘held it together’ and got on with stuff that needed to be done. You can take a listen on YouTube here

If I was to have one ask of Susan, the author, it would be to write another book, sharing that you don’t need to be old to die, death can happen at any stage along the life continuum and the person who leaves us always imparts gifts no matter what their age.

In 2017 7653 babies, children and young people died, 21 every day in the UK (ONS Statistics), with 700 of those children dying in London. Reasons include neonatal events, malignancy, chronic medical conditions including chromosomal, genetic and congenital abnormalities, infections and sudden unexpected, unexplained deaths and accidents. Safeguarding incidents are another reason for child death.

We were reminded of #VictoriaClimbie this week by @UKVCF and @lorraine_tinker (another of my Children’s Nursing heroes) tweeted a picture of Victoria’s mum speaking to a conference back in 2008 aiming to ensure that no other child should suffer as Victoria did and that her legacy would not be forgotten.

Children die in a range of places including hospital environments, at home, in public spaces, in hospices and other areas.

Reviewing and the sharing lessons learnt about children’s death is a key priority of the reforms to the Child Death Review process that are being embedded this year across England. From the 1st April we’ll have a National Child Death database in England that will mean all the information on child deaths will be in one place, which will assist in thematic analysis and sharing learning widely. The Child Death Review statutory and operational guidance offers further details https://www.gov.uk/government/publications/child-death-review-statutory-and-operational-guidance-england

The Healthy London Partnership team @HealthyLDN have a programme of support to assist organisations in addressing these changes https://www.healthylondon.org/our-work/children-young-people/child-death-review-programme/ (useful even if you’re working outside London).

Over the past year I’ve had the privilege of working with an organisation where we’ve really worked to improve experiences of care when child death happens. This was driven by the NICE End of life care for infants, children and young people Quality standard [QS160] https://www.nice.org.uk/guidance/qs160 and also the @NHSEngland learning from deaths work https://www.england.nhs.uk/publication/learning-from-deaths-guidance-for-nhs-trusts-on-working-with-bereaved-families-and-carers/

In both of these programmes parents have been directly involved, the voices of people such as Dr Zoe Picton-Howell who tweets via @4AdsthePoet have been powerful and valued in driving cultural change.

Sadly however for families this work hasn’t as yet been universally adopted, as the wonderful charity @Tog4ShortLives reflect https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/bereavement-care/  more supp ort from commissioning organisations would be valued. perhaps 2019 will be the year we address this challenge in all areas?

Our local group has brought colleagues from other local Trusts, Universities, Children’s Hospices, Haven House @HavenHouseCH, Richard House @RichardHouseCH, and the wonderful charity Child Bereavement UK @cbukhelp together. This is where I need to give shout out to CBUK’s animated annual report, it’s so worth watching https://childbereavementuk.org/impact-report-2017-18/ Together we’ve planned and delivered study days on End of Life and bereavement care thanks to our local practice development nurses @AnnalBray @brownbec @PaedPDNSRLH and the Trust End of Life Education team, this also focuses on caring for staff which we must never forget if we are to retain professionals who are repeatedly exposed to distressing situations.

We’re also working to adopt the Advanced Care Planning process http://cypacp.uk/

Thanks to @Rosamund1010 and with support of @Barts_Charity any family where an adult dies in hospital and there are children in the family, books are gifted to help explain difficult and upsetting situations. This is wonderful thoughtful practice and is hugely valued by families.

@_4Louis provide us with very special memory boxes to gift to families which are beautiful.

We’ve so much more to do though, one of our most special meetings of the year was when a family joined us to share their experiences, it reinforced why this work is so important. Ensuring families get information such as ‘Information for families when a child dies’ https://www.england.nhs.uk/wp-content/uploads/2018/07/parent-leaflet-child-death-review-v2.pdf  with care that’s kind and compassionate from staff, are the key elements of memories that will remain with families for ever.

Children and young people when they die leave rich and important legacies, those gifts referred to in Badger’s story.

Organ donation is perhaps one element we are talking about more, Max and Keira’s families demonstrate the impact of donation in an incredibly moving short clip

For health care professionals if you haven’t read ‘Follow the child’ by Sacha Langton-Gilks @SachaLG mum of David, or DD as he’s known, here’s a blog Sacha has written on anticipatory grief http://www.icpcn.org/follow-child-blog-anticipatory-grief-sacha-langton-gilks/ I’d really recommend you invest in a copy of her book or ask your Trust/University library to buy a copy. It should be on all university reading lists for Nurses, Doctors and AHPs.

‘Living with Lennon’ is a blog written by Nikki, Lennon’s mum and she talks very articulately about her grief, do follow her @LivingwithLen5 https://livingwithlennon.co

Just this week @Tog4ShortLives tweeted that ‘The #childrensfuneralfund – announced by the government last April – is still yet to be introduced 📻 Listen & share from 2:50:50 for a powerful interview with @carolynharris24 & Alison on why this support for bereaved parents is absolutely vital https://www.bbc.co.uk/sounds/play/m0002r3g it’s a powerful listen that brings to the forefront of our minds just how much families struggle in the darkest of times.

So to end where I began ‘Badger’s Parting gifts’ for me is a call to action, of course as health professionals we MUST do everything we can to prevent child deaths, safe competent care is so vital in this. Whenever a child dies we must use the gift of information wisely to help us prevent future deaths, yet disseminating information, ensuring it gets to those directly delivering care is a challenge, I suspect that’s another blog…. as is the importance of staff care….

So some asks? What can we learn from each other as we prepare for the changes to statutory processes this year? What difference can we and our teams make to the memories of families when the death of a child happens? after all we only have one chance to get this right…

As always thoughts, links would be really valued …..

#Ostriches #Meerkats #Peacocks and #ProfessionalCuriosity


Its been a week of ostriches, meerkats and peacocks, bear with me and I’ll explain….

Did you know that when ostriches are nesting they dig shallow holes in the ground to use as nests for their eggs? They use their beaks to turn their eggs several times each day. From a distance, an ostrich leaning into a hole to turn an egg looks a bit like it’s burying its head in the sand (but of course if they did that they’d suffocate). But ‘looking down’ is something that happens for us all sometimes as professionals, particularly when times are tough and things can seem overwhelming.

A meerkat by comparison offers an upright bright eyed vision, an animal scanning its horizons, looking at what’s ahead, being curious.

I’ve been thinking about how we nurture professional curiosity recently, which is described as having the capacity and communication skills to explore and understand what is happening rather than making assumptions or accepting things at face value, looking out and up rather than perhaps looking down like an ostrich?

Professional curiosity is something that safeguarding boards have written about extensively as it’s often the element that could have been strengthened when things have gone wrong. This is a particularly helpful overview from Brighton and Hove Local Safeguarding Children’s Board (LSCB) http://brightonandhovelscb.org.uk/wp-content/uploads/Professional-Curiosity-Bulletin-FINAL.pdf that I’d recommend, its worth downloading, printing off and sharing with colleagues.

Professional curiosity is a skill that we use every day in our practice in the NHS and beyond, yet I’m not sure if it’s a skill that comes easily to us, particularly if the signals are ‘weak’ https://www.mckinsey.com/industries/high-tech/our-insights/the-strength-of-weak-signals Personally as a child I was taught to ‘do as I’m told’ and rewarded for doing just that, and whilst academically we’re encouraged to analyse, compare and contrast situations to challenge ideas, I wonder if it’s easier to do this on paper than to do it in practice? Challenging, exploring and analysing issues face to face with an individual or in teams is an important part of our practice. These skills to effectively dig deeper, to be curious, to seek understanding through a questioning approach, to listen with fascination, (Michael West’s @WestM61 term, do watch his thoughts on leadership
https://www.youtube.com/watch?v=0RXthT32vcY ) need nurturing. Role models who do this well can be hugely influential in helping us develop maturity in our questioning and listening. Who do you know that does this well? What are the skills they have? It was a joy this week to spend time with Nicki Fitzmaurice do follow her at @nickifitz she’s one of my Children’s Nursing heroes, she does professional curiosity and listening with fascination wonderfully!

And that brings me to Peacocks, I love their beautiful feathers as they open up and show off their vibrant colours. Sometimes however we’re reluctant to shine like peacocks for a myriad of complex reasons. At the NHS youth forum residential last weekend I shared the words of Nelson Mandela to encourage young people to shine and share their stories, their views and perspectives, because when we’re brave, take courage, ‘hold our nerve’ and speak up, it gives others permission to shine too, this was the quote I shared with them…

So my challenge, what do you most identify with, the characteristics of an ostrich, a meerkat, a peacock or something else? I’d love to hear your thoughts particularly on professional curiosity, being brave and speaking up, how do you nurture yourself, your teams and achieve these vital skills?

Can social media help us grow professional curiosity? Here’s a link to some blogs on social media written with colleagues that may be of interest http://www.wecommunities.org/blogs/2307

What’s my role in tackling health inequalities?


I had an interview recently and I had a really difficult question posed to me ‘significant health inequalities exist in this area, what will you do to address this?’ As is often the way I’m still reflecting on the question and wondering what my role as a Children’s Nurse is in tackling the challenge of health inequalities?

The Royal College of Paediatrics and Child Health state ‘Nearly one in five children in the UK is living in poverty and inequality is blighting their lives, with those from the most deprived backgrounds experiencing much worse health compared with the most affluent.’ The State of child health reports and annual updates are worth dipping into https://www.rcpch.ac.uk/resources/state-child-health-2017-full-report The academic giants such as Sir Michael Marmot @MichaelMarmot have written extensively and authoritatively on this and I’d recommend this chapter for a helpful overview on child health and inequalities https://www.bma.org.uk/-/media/files/pdfs/working%20for%20change/improving%20health/child%20health/growingupinuk_may2013_chp3.pdf

At the @TheKingsFund this week Neil Churchill @neilgchurchill of NHS England @NHSEngland took us through the NHS long term plan (LTP) https://www.england.nhs.uk/long-term-plan/ and reinforced the commitment to spread best practice that’s happening to reduce health inequalities across the NHS, working collaboratively with the voluntary sector and other system partners importantly focusing on the unique needs of the person in front of us is a golden thread that runs throughout the LTP. Kevin Fenton @ProfKevinFenton provided the local authority perspective, reinforcing that deprivation drives inequalities and encouraged us all to collaborate on tackling these big challenges.

Which brings me back to my personal challenge so what I can do?

Can I help create more volunteering opportunities for local communities to engage actively with the NHS? We know the NHS is a big if not the biggest employer in local areas and we know that taking people out of poverty with a regular income transforms lives. Volunteering opens doors and increases aspirations. Having recently read Michelle Obama’s autobiography ‘Becoming’ (highly recommended) she talks about the impact of connecting with young people in schools and how it raises aspirations. Do follow @iwill_campaign for inspiration.

I can also engage with schools to promote careers in healthcare, Bev Matthews @bevMatthews_ and Ruth May @RMayNurseDir are doing a great job progressing this agenda. I can work with university colleagues, this week I got out on the wards to meet new foundation degree nurses who are on placement and I’ve also been interviewing potential new students too, it was great to be reminded of this short film by the RCN ‘I am a children’s nurse’ https://www.youtube.com/watch?v=O81ZY9wHhHw We’re also currently exploring ways to increase placement opportunities for students too so that we increase the volume and diversity of placements.

I can promote breast feeding, signpost families to smoking cessation advice, share information on accident prevention schemes, make sure my safeguarding training is up to date….

In my leadership role I can be an advocate, I can share narratives at health and well-being board meetings… but the health service on its own can’t tackle health inequalities a minimum income standard is needed for good health and well-being of children and many families such as those with disabled children or those from BAME are particularly vulnerable …

How would you have answered this question? Thoughts valued!

worth a read too!





from Jessie McCulloch via Facebook

Definitely linking up with other services which helps to identify and respond effectively to health inequalities. PHE have some guidance here:

Click to access Reducing_health_inequalities_system_scale_and_sustainability.pdf

and particularly about inequalities relating to ethnicity: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/730917/local_action_on_health_inequalities.pdf.

I’m a HV too, so advocating / influencing about health inequalities is definitely part of our role. The Institute of Health Visitors can be joined by non-HVs from other roles involving public health & they have a range of resources and evidence summaries, particularly about supporting families with particular needs (e.g travelling families, homelessness) – https://ihv.org.uk/for-health-visitors/resources/minority-groups/

20/2 Children & Poverty Article in Guardian


#ParentPower or #ParentDisempowerment what’s our choice?


I had a teacher, Miss Jones who taught me in Brynhyfryd Junior School, she exuded energy, wisdom and passion, and seemed to dance lightly around the classroom, it was exactly how Pooky appeared on Monday morning as I sheepishly crept in late (due to a fire that had disrupted the tube lines) to a meeting near London Bridge. Dr Pooky Knightsmith (@PookyH) along with Joanna Goodrich (@goodrichjoanna @pointofcareFdn) were feeding back on work commissioned by the patient insight team at NHS England (@Clareenston @RuthElizHudson et al) on how we should gather experiences of children, young people and families using mental health services.

Rightly there was lots of direction on how we could better hear and action the experiences of children and young people, but for these reflections I’m going to focus on the role of parents.

The power of parents has continued to amplify since 1961 when a group of mums from Battersea set up ‘Mother Care for Children in Hospital’ to ensure recommendations in the ‘welfare of children in hospital’ ie the Platt Report (which recognised the importance of parents and that visiting/staying with their child should be unrestricted) were universally adopted in all hospitals http://www.actionforsickchildren.org/history/. Other powerful parent lobbyists such as the National Network for Parent Carer Forums @NNPCF have led important policy change for children with Special Educational Needs and Disabilities (SEND) and @WellChildFams shared the care they provide for their children in the phenomenal @NotaNurse_but campaign which captured the attention of other parents, healthcare professionals and commissioners alike are more contemporary examples of real change-makers.

The spotlight on this current work is with parents who have children with mental health needs. Pooky heard of their frustration, comments shared indicated that they were terrified of ‘making a fuss’ in case that had an impact on their child’s care, they felt professionals held the power, that they were kept in the dark and importantly were an under-utilised resource in their child’s care.

These comments are reinforced in the report commissioned from the Association of Young People’s health (@AYPHCharity) http://www.youngpeopleshealth.org.uk/wp-content/uploads/2016/11/AYPH-Parenting-briefing-11-nov-2016.pdf please do dip in, some of the asks from children to involve parents more are powerful.

Then Friday this week took me to Liverpool to the first national parent conference, organised by ‘Fresh Plus’ (@FreshPlusGroup) the parents/carers of children and young people using mental health services at @Alderhey https://www.liverpoolcamhs.com Parents and professionals from across the country attended, and it was rightly articulated that whilst many more parents wanted to attend they were just too scared to leave their child reinforcing the physical, emotional and financial strain experienced by families.

You can catch up on the highlights of the conference by taking a look at #ProudParent2019. One parent shared ‘I am a Proud Parent, my daughter is 21 now, when she was 14 we didn’t think she’d see 21, she’s made it’. We also heard from siblings asking us not to forget them too.

Parents clearly want to be partners in care, they want guidance, education and training programmes. The @CharlieWtrust has the most wonderful resources for families https://www.cwmt.org.uk/resources please do take a look and share them. Parents also want to tell us what’s working, what isn’t and to share ideas for improvement, yet professionals need to be open and responsive to this feedback and we don’t always create the right culture for parents to do this.

Support for parents is vital either from professionals or peers, to quote Pooky ‘parents are the children’s chief cheerleaders, who are parent’s cheerleaders?’

Are we as professionals involving parents actively/therapeutically in care, valuing and supporting their contribution and providing mechanisms for their feedback, let alone involving them in the commissioning and design of services?

One parent said ‘I don’t need to know everything, of course my child has a right to privacy, but I have a right as a parent to guidance, support so that I can help and do the right stuff’

The conference in Liverpool stated it’s time for #FreshThinking….

Post blog publication:

Mary Busk @marybusk has flagged the #AskListenDo work https://www.england.nhs.uk/learning-disabilities/about/ask-listen-do/ which a really practical way of gathering views from families and then importantly taking action.

Luci Butler @butler_luci asked for #FreshThinking about transitioning from CAMHS to AMHS …

Wondering if Avrind’s #ReadySteadyGoHello work in Southampton would add a more structured proactive approach to transition?


Great to see discussion about these issues online, thanks to Steph for her reflections …